I hope I'm not making a topic that already exists. I tried to look. As people who have been reading here know, I've been struggling with swallowing problems for 2 years post treatment.

The first big issue is esophageal strictures, which keep coming back, but I also have an epiglottis worn away from radiation, some limits in my tongue movement, lymphedema on the base of my tongue, and trismus.

Right now my throat has recently been stretched open and I am strugling to do the Shaker exercise 3 times a day and swallow as much as I can. Basically, anything that isn't mushy and has some weight to it (such as little bits of sausage in a sausage gravy) will feel like it goes down but get stuck in the little pocket my epiglottis forms or in pockets above my vocal cords. Fortunately, I have not lost any sensation there and so usually I eventually feel when that happens and it gets coughed up. So maybe I can avoid aspiation pneumonia despite all this.

On top of this, I have a very sensitive (easy to start feeling pain) mouth after radiation. I can't really have anythimg acidic --even the mint in Biotene mouthwash stings my mouth pretty badly, though I use it anyway.

I know there are not many people who have it this bad unless it is right after rad, but I figure I'm probably not the only one. I thought maybe we could support each other, whereever we are.

Where I am is pushing to get off the tube, though I expect I'll be eating things with the consistency of baby food and pudding for the most part. At least I'll be able to take a bath, go swimming and canoeing in muddy rivers (all of which I used to love and which I don't do right now because of the tube).

So I'm going to share one new triumph last night which is I finally found a pasta that I can get down consistently if I put a bunch of Olive oil or butter on it. Pastina. Little tiny pasta grains. I didn't think to try it for a long time ebcause I thought it would be like rice, which is a disaster for me, but it clumps together just enough and is just mushy enough, that it goes down very easily. It is alos wodnerfully non-irritating for my poor sore mouth, unlike mashed potatoes, which is my main other starch, but which rubs against the sensitive spots in my mouth enough to irritate them.

It's much easier to get all my calories orally if I can have some pasta, it isn't all soups and protein shakes.

Nelie

Great News Nelie, I was told by a doctor that the 4 most important items for a meal are: pasta, potatoes, bread and rice. Enjoy and I hope you will get rid of the feed tube soon. ps My husband is finding eggs scrambled easy to eat and it is a protein. Take care, Carol Ann...

I wish I could eat scrambled eggs. I've tried several times and they don't work for me.

Nelie,

I use egg beaters and add milk to it. They come out softer and not so dry. You can use regular eggs as well. Try angel hair pasta. It might work for you. I make it with oil & butter, or a white cheese sauce. Small bites.

I am having problems swallowing again. I am starting to choke again. I am getting ready to get my esophagus dilated again. I have had to revert back to oatmeal and real easy meals for me to eat. Potatoes are out for me as well. I also found that trying to eat a regular meal amount was to much. I eat a child portion, then few hours later eat a little more.

Lately I too have had my mouth bothering me more. Not sure why? It is stinging. I am trying to rinse & swallow some meds. for thrush to see if it will help.

I can understand the wanting to get rid of the feeding tube! If you can put together enough food ideas to survive, it should work. You will feel like a new women after it is gone.

Hope something here has given you some support and ideas to think about.

Take care,
Diane

Nelie, Have you tried poached eggs? You might also experiment with different risotto recipes [ you can use the pastina instead of rice if you need to. Amy in the Ozarks

Actually, I did try poached eggs a while ago and got some down. Then my throat started closing up again and I had problems the next time I tried. I think they'd be OK now. I should try.

Hi Nellie,

I have some trouble swallowing but not horrible. It's just very apparent that my esophogus is much smaller than it was before and I choke easier. Your comment about your mouth always being sore really rings a bell with me, mine is ALWAYS sore and irritated, along with my lips. I've gotten used to it but sure wish there was a way to resolve it.

Diane gives good advice for eating scrambled eggs, although I do use regular eggs, I also add milk to them along with cheese and I cook them VERY soft. I mash them up with my fork and they suit my mouth and throat just fine. Toss in some onion salt and they are delicious. I've found I can eat alot of things if they are the correct consistancy.

Wish I could help you more, you certainly have had a rough road with the eating and I love your spirit.

Minnie

Nelie,

Ditto for me on the stinging mouth - 3 years out and most days my mouth burns like crazy. Sugar and the sugar and acid in fruits is the worst - feels like hot peppers or something. I have recently found that guacamole works really well - just wish I could have the tortilla chip with it! Usually I just eat the guacamole by the spoonful - whatever it takes, right? At least the avocado is a good source of healthy fats. I know what you mean by rice being a disaster - those little grains go everywhere and it seems like they multiply while they're in there! Does anyone else have the sensation of not ever really getting hungry? I generally have to remind myself to eat - I don't have cravings anymore - the joy of eating has definitely diminished - I have gained about 15 pounds in 2 years but that seems to be holding for the last 6 months or so. I did make homemade ice cream yesterday and that goes down just fine!

Nelie, I e-mailed you a year or so ago and talked about returning to school - well, I have finally gotten the courage to do just that. I start Monday at my local junior college and have registered for the fall term - taking math and science courses so I can transfer to a 4-year college and get a degree in clinical nutrition/dietetics - this should take 4-5 years and I'll be 50 when I'm looking for a job but I really want to help head/neck patients with these eating problems so hopefully where there's a will, there's a way! It's been 23 years since I sat in a college class - I was in the bookstore the other day and everyone was my daughter's age! In fact, I ran into a couple of her good friends - I'm sure I'll have classes with some of them - that's going to be so strange! Anyway, wish me luck - I'm starting to get cold feet.

Keep on trying with different foods - that's what I did and still do - just experiment. I still have to take very small bites with lots of liquid and it is a slow process - I spend 30 minutes to an hour depending on the meal. Take care

Pam

Pam,

I remember you emailing me and I am so happy you are returning to school! If your 2 year college is like the one where I teach, you'll find that, although most of the students are very young, there are enough older ones like you that you won't be that big an oddity. And I can tell you from the professor's perspective, we love the older students like you who are there to really learn and have gotten the time management thing down in a way many 19 year olds have not.

It is good to learn I am not the only one with a sore stinging mouth most of the time (and Minnie, I carry lip balm with me everywhere and use it I don't know how many times a day or my lips get just as bad). Because sometimes I worry it's some kind of sign of a recurrence though my ENT did tell me I may just have this kind of mouth pain forever.

Thanks for the Gaucamole suggestion. I had forgotten about that. It's funny, I find I can tolerate soups and other things flavored with pepper (as long as it isn't super hot pepper) without it hurting. But, as you say Pam, sugary things can burn my mouth sometimes as well as anything at all acidic (and I used to LOVE vinegary things like olives and pickles--oh well).

Also one night something will work and the next it won't for some reason. I think I cooked the pastina a little less tonight so they were more al dente and didn't stick together as much and they kept going everywhere in my mouth, more like the problem I had with rice. It took me an hour to eat a small bowl of pastina with a mushroom gravy and some slightly melted boursin cheese with herbs and garlic. I had some pureed carrots I was going to eat but I was so tired I gave up and gave myself a can of Jevity and some berry juice through the tube just to be sure I got close to enough calories today. I'm a good weight right now--I have dropped 4 sizes from what I was pre-cancer(!)--and I don't want to get any skinnier. I'm tired of having to get new clothes and give away old ones that never even got worn much!

Anyway, thanks for the enouragement, Minnie and Pam, I really need it. My husband tries but he's kind of burned out on it himself.....

Nelie

While my esophogus is not as wide as it once was, I don't have too much trouble and only get things caught about once a day, but I am interested to hear that I am not the only person who cannot tolerate Biotene mouthwash. I do not do alcohol or vinegar (have had some interesting experiences with salad dressing) but I thought the mouthwash must be okay. Wrong. Anything spicey is a no-no also.

On another subject, I do a class working with weights (for stong bones) thrice weekly at the local community college, and at least half the students I see in the halls and on camput are middle aged and older. So Pam, you do not need to have cold feet. Good for you and your plan!

EDIT, EDIT! I meant to type "campus" which means it must be time for me to go to bed. Sweet dreams, everyone.

Hi to all,

OK, my mouth was stinging and I took some medicine for thrush. It works!! My mouth is feeling better and I am able to taste better. I did not show big signs of having thrush. So check your mouth and see if it looks a little white.

The name of the medicine is Nystatin, liquid swish and swallow. Since we all have dry mouth we are very prone to have this Thrush recurrence. I have this on hand for when I think I have a problem starting.

Sure hope this will help you. It is worth a try.

Take care,
Diane

OK, I'm wondering if anyone else has this happen to them. I'll be swallowing stuff and everything is going fine, then suddenly I try to take a swallow and it's like there's some kind of wall at the top of my throat--all the stuff comes back in my mouth and I can't swallow a thing. And no matter what I do, how I tilt my head, etc. that keeps happening. And what I've learned over time is that always ALWAYS some time after this happens (sometimes we're talking even an hour or two later) I give a cough and up comes some solid piece of something that must have been stuck *somewhere* though not where I could feel it--and somehow it keeps me from getting anything else down. These are often little pieces of stuff, not big, but something fairly solid like a hunk of vegetable from a soup I thought I had strained or a hunk of sausage in a sausage gravy that I thought I had pulled all the chunks outof. This just happened and I was eating some commercially prepared guacamole and the thing that I eventually coughed up was, I think, a smallish piece of avocado skin that had somehow gotten in there. If I were swallowing normally, I'm sure it would have gone down with everything else because it wasn't a big piece at all.

Anyone have this happen? Can anyone tell me what's actually going on when that happens?

Nelie

Nelie,

I hope this is not a dump question. I am sure you have had a swallow test. Right? They need to do one and see how you are processing it and how far. I can not believe you are still having so much trouble. I think they are missing something.

I had one done and they could see how far and where it was hanging up. They also found on the first Dilation a web like scare that would go up and down when I would breath. This accounted for the times I could swallow fine and other times I could not. I just had my 2nd dilation done.

Hope you call & tell them what is going on.

Take care,
Diane

Nellie,

You just described what happens to me 7 out of 10 times that I take my thyroid pill. It's a TINY pill mind you, but sometimes I will go to swallow it and it's like you say.............a WALL comes up and nothing can get past it. I learned a trick where I will relax my mouth, than immediately swallow again with force and it goes down. The first few times it happened I spit it out in the sink, but now I've learned to manage it.

Hope this helps!

Minnie

Diane, I have had tons of swallowing tests. This thing I described doesn't happen all that often and has never happened during the swallowing test. I'm sure if it did, they could see why but I can't get it to happen at will.

Minnie, yeah, I am still grining up my thyroid pill (and my other pills--Tamoxifen and Salagen) and flushing them through the tube. I have tried and tried to swallow the thyroid pill (like you say, it is so tiny) and it just doesn't work. I guess if I want to get off the tube entirely I'll have to learn how to take those pills in a drink or something....

But I will try to relax my mouth and throat and swallow again right away. Maybe that will help.

Nelie

Nelie,

Just so you know, I am another one who experiences that particular event quite often. Like Minnie says, you have to try to relax your mouth and swallow again. I can get my thyroid pill down but everything else has to be cut in half and sometimes fourths. I have to take really small bites of food and try not to eat too fast or I will get blocked - that's my name for it - it's a scary feeling - but I've noticed I can breathe just fine during it.

Anybody else having really dry mouth issues right now? Mine is drier than usual and drier deeper down in the throat where no amount of liquid seems to reach it to relieve the dryness. My doctor told me last year that summer was not my friend - you would think the moist air (and where I live in Arkansas the humidity is oppressive)would help make the mouth more moist, but it's just the opposite - dry air is easier on the throat and mouth. My doc said I would love being out west.

Hey Nelie, thanks for the words of encourgement about returning to school. I just finished my first week and am loving it. There are only 11 students in my class and 80% of them are my age or older. I am very comfortable being there - everything is moving very fast though and it took me a couple of days to make sense of anything but have now got a handle on things (I think) Anyway, did the guacamole work for you at all? I just made some tonight - it's something that just works good for me. In addition, my doctor prescribed Xanax to help me be less anxious about eating - it takes me a few minutes to talk myself into being ready to eat cause my mouth will go dry and my throat will start closing up - I believe the Xanax does help-and I don't have to take it everyday - just about every 2 days or so. At least I have one food that goes down with no problem - ice cream - and I love ice cream! Just keep trying with all the different foods you can think of. Oh, I have also noticed that I can swallow better after engaging in physical activity like hiking, walking, kayaking etc.

Pam

Pam,

I'm glad school is going well--I told you you wouldn't feel out of place there!

Yes, my mouth is feeling dryer lately. I have been not using the two humidifiers I have in our bedroom on my side of the bed because we are sleeping with the windows open--and the air here is fairly humid at night usually. I didn't know dry air was better--if that is so, why do humidifiers right near me at night usually help my mouth be not so cotton-mouthy? Anyway, I have been trying to use that Biotene liquid at night, putting a bunch in my mouth before I go to sleep. Istill wake up dry in the middle of the night but no so often dry and in horrible pain from it, so I must be drying oout a little less.

Pam, speaking of physical activity and drymouth, how do you deal with that during aerobic activity? I find as soon as I start breating deeply from hiking a hill or whatever, my tongue also starts sticking to the roof of my mouth because I get so dry.

Nelie

Nelie,

Sure sorry that your swallowing is giving you so much trouble. I was hoping that through swallow test or a scoping they could find your problem.

I truly hope you will get it figured out.

take care
Diane